Untangling the Web: A Close Look at Diagnosis Disclosure among HIV-infected Adolescents

Abstract

As children living with HIV survive into adolescence and young adulthood, attention to the relationship of diagnosis disclosure to psychological functioning, interpersonal relationships and HIV prevention is needed. This exploratory study describes the level of adolescents' diagnosis disclosure to family, friends, and potential sexual partners and the relationship between disclosure and psychosocial variables.

Disclosing the diagnosis of HIV/AIDS to a child, and by the child to his or her social network, is an emotionally charged issue. In the 1980s, most children living with HIV/AIDS did not survive beyond their fifth birthday [1] and therefore, diagnosis disclosure was a low priority for parents and health care providers.

The epidemiology of pediatric HIV has changed in recent years due primarily to decreasing perinatal transmission of HIV. There are an estimated 9,419 children <13 living with AIDS in this country [2]. Fortunately, the majority of children born with HIV are now expected to survive through adolescence. As risk-taking behaviors often begin during adolescence, disclosure becomes essential for HIV prevention as well as for preservation of the adolescent’s own health.

Despite conjecture about the psychological effect of diagnosis disclosure on children, investigations of this issue are few [3–5]. The goals of this exploratory study were to (a) examine the association between timing of parental disclosure of the child’s diagnosis to the child and the child’s own disclosure patterns, demographic variables and psychological distress, (b) assess romantic disclosure and its relationship to general disclosure, and (c) explore the association between disclosure and posttraumatic stress symptoms.

METHODS

Study eligibility criteria included: 1) on active protocol during the preceding 5 years, 2) 13–24 years old, 3) comprehension of English, 4) awareness of HIV diagnosis, 5) absence of psychotic symptoms, and 6) absence of cognitive impairment (Full Scale IQ >75). The National Cancer Institute Institutional Review Board approved the study. Adolescents and caregivers were approached during a clinical visit and the relevance of the study was described. Adolescents >18 and caregivers signed informed consent and adolescents <18 gave written assent.

Sample

Fifty patients met study inclusion criteria. Of these, 40 completed all measures during the summer of 2003 (Table 1).

Table 1.

Demographic Characteristics of the Sample

Demographic Characteristic	Value (n)
Age (years)	18.3 (40)
Time since diagnosis (years)1	11.0 (40)
Age when learned diagnosis (years)	7.5 (40) (range 1–16)
Gender
Female	62.5 (25)
Male	27.5 (15)
Race
White	55.0 (22)
African American	25.0 (10)
Hispanic	12.5 (5)
Other	7.5 (3)
Transmission
Vertical/Perinatal	65.0 (26)
Transfusion of blood/clotting factor	35.0 (14)
Latest CD4 Count
0	8.3 (2)
1–50	12.6 (3)
51–200	8.4 (2)
201–500	22.5 (9)
>500	20 (8)

¹Some individuals reported that they have known their diagnosis for as long as they can remember. Their age of learning the diagnosis was coded as 1 year.

Instruments

Participants were administered four scales face-to-face:

1. The Impact of Events Scale (IES) [6] measured frequency and severity of intrusive and avoidant symptomatology [7] (internal consistencies: .81–.85).

2. The Self-Perception Profile for Adolescents (SPPA) [8] measured nine aspects of self-competence (internal consistencies: .73–.90).

3. The Brief Symptom Inventory (BSI) assessed nine dimensions of symptomatic distress [9]. Raw scores were converted to t-scores using nonpatient adolescent norms. “Caseness”, a clinical index of distress, was computed from a t-score of ≥63 on the Global Severity Index (GSI) or on two or more clinical subscales (internal consistencies: .65–.87).

4. A questionnaire, designed by the investigators, collected demographics, pressing psychological concerns (frequency of participant's struggle with 6 life issues) and disclosure levels. Disclosure was measured as sharing the diagnosis with: 1) immediate family, (2) immediate family/few close friends, (3) entire family/few close friends, (4) entire family/most friends, (5) entire family, most friends/people you work/go to school with, (6) most people in your life.

Medical charts were abstracted for CD4+T lymphocyte subset values and plasma HIV-1 RNA levels by quantitative PCR (Roche Amplicor ™ Assay).

Power

This study employs one-way ANOVA, Pearson product-moment correlations and chi-square analyses. The ANOVAs yielded a power of .07, .21 and .49 to detect small, medium and large effect sizes, respectively. The correlations yielded a power of .09, .48 and .92 to detect small, medium and large effect sizes. The chi-square analyses yielded a power of .08, .38, and .82 to detect small, medium and large effect sizes [10].

RESULTS

Level of disclosure was divided into three groups (Table 2). When the sample size was too small to utilize the 3-category representation of disclosure, disclosure was analyzed as a continuous variable.

Table 2.

Disclosure Status (n = 40)

Level of Disclosure		% (n)
Low	Immediate Family	10.0 (4)
	Immediate Family and a Few Close Friends	22.5 (9)
Medium	Entire Family and Few Close Friends	22.5 (9)
	Entire Family and Most Friends	17.5 (7)
High	Most People in My Life	27.5 (11)

Participants who learned of their diagnosis younger had disclosed to more people (r=−32, p=<.05). Level of disclosure to others was positively correlated with current age (r=.34, p<.05). No relationship was found between age of learning the diagnosis and mode of transmission, disclosure to romantic partners, posttraumatic stress symptoms, or psychological distress. There were also no significant differences found in level of disclosure and mode of acquisition or gender, CD4 values or HIV-1 RNA levels.

Disclosure to romantic partners was the greatest challenge reported. Nevertheless, those who reported ever having a serious romantic relationship (53%) disclosed their diagnosis to 68% of partners. The more people (family/friends) that the participant disclosed to, the more likely they were to disclose to romantic partners (F=21.1, p<.001). Low disclosure participants disclosed to fewer partners than medium/high disclosure participants (F=30.0, p<.001). Notably, sexual activity with “romantic partners” was not specified in the interviews.

Those highest in disclosure had the lowest avoidant and total IES scores (F=6.6, p<.01; F=5.1, p<.05, respectively). Thirty-five percent of the sample met criteria for “caseness” on the BSI, indicating psychological distress, however, distress was not significantly associated with level of disclosure. Those highest in disclosure had higher self-competence in their peer relationships (F=3.2, p=.05) than those with medium/low disclosure.

DISCUSSION

Disclosing one’s HIV status to ‘people you date’ was identified as the greatest concern in this sample. While most HIV-positive youth struggle with disclosure, those who disclose report feeling more self-competent with peers. Perhaps not having to worry about whether a friendship will continue post-disclosure allows the HIV-positive teen to have more open/satisfying relationships with friends. This could explain the relationship between disclosure and fewer posttraumatic stress symptoms. Conceivably, once disclosure occurs, disease-related thoughts become less intrusive and one no longer feels compelled to avoid reminders of their illness. The role of a strong social network can provide an alternative explanation. Social support has a well-documented association with psychological well being and may buffer the traumatic effects of the disease experience. Disclosure itself may not be what determines levels of posttraumatic stress, but rather may be a confounder in the relationship between social support and overall psychological functioning.

The association found between general disclosure and romantic disclosure may suggest that those who have the confidence to risk telling someone about their diagnosis may also have the confidence to discuss HIV prevention.

We did not find an association between the age of learning the diagnosis and later psychological distress or perceived self-competence. Developmental, neurological, and emotional readiness to understand the diagnosis and a disclosure style that respects family style may be more important than the age at which disclosure occurs.

This study was limited by three primary factors. Our sample was small, limiting the power of the statistical analysis and generalizability of the findings. Large scale, prospective, longitudinal studies are needed to explore normal and pathological responses to living with HIV, how the disclosure process evolves throughout the illness, and individual differences in order to identify the immediate and long-term consequences of disclosure. Second, participants were enrolled in a clinical trial. The psychological adjustment and disclosure patterns of those actively involved in care might be different than those less able to keep up with the demands of a research trial. Third, agreement regarding the most appropriate measures for assessing symptoms of posttraumatic stress disorder would help bring consensus to future research findings.

Conclusion

The first goal of this study examined the link between age of disclosure and later psychological distress and disclosure patterns. A link between age the participant learned the diagnosis and later psychological distress or romantic disclosure was not found. Questions posed in the second and third study goals suggest that greater disclosure is associated with better psychosocial outcomes, fewer posttraumatic stress symptoms, greater disclosure to romantic partners and higher peer self-competence. While preliminary, this study is the first that explored the psychosocial effects of an adolescent’s HIV diagnosis disclosure. The web of disclosure is complex and delicate, each disclosure encumbered with consequences. As clinicians, we need to help adolescents build the communication, health care and general life skills that correspond with their increased survival rates.